11/16/11 - Some of the recent comments on my blog got me thinking: "If I had another dog diagnosed with SARDS, what would I do, now that I have all this (unfortunate) 'experience' under my belt?". Of course, I hope that this would never happen!!
Well, this would be my course of action if I started to notice one of my dogs displaying the early signs of adrenal exhaustion/Plechner Syndrome/SARDS (increased thirst, urination, hunger, panting/heat intolerance, inappropriate elimination, lethargy, depression, confusion, trouble seeing...). After my initial shock of "how the hell could this happen AGAIN?!", I would most certainly act quickly by doing the following:
Please remember - I am not a veterinarian, and I don't present this list to suggest a treatment for your dog! These are only my suggestions for action based on my experience with one dog - Reo. These suggestions may seem crazy and outlandish to some, but - this is my blog, afterall. ;) If I can give you and/or your vet food for thought, than that is good enough for me.
1) Switch up the diet (this is a moot point for us, since all the dogs are on high-quality, grain-free, low phytoestrogenic dehydrated raw food, with cooked protein and veggies on top). But, if my dog was eating commercial kibble that contained grain or a lot of phytoestrogenic ingredients, I would make the switch right away. Also switch to all natural, hormone/antibiotic-free, made in the USA - not China!, grain-free treats, as high-quality as possible.
2) Immediately get blood drawn for an EI-1 panel from NVDS, as well as a SuperChem CBC blood test at the vet.
3) Order the supplements that Caroline Levin suggests in her protocol - Cell Advance, Phosphatidyl Serine, Magnesium Taurate. Order Source Naturals Lutein supplement. Order the Nutrimin mineral supplement that Dr. Plechner suggests (all my dogs are already on this).
4) Start the dog on the supplements as soon as they are received, even if blood tests have not returned yet. Also begin feeding sardines packed in olive oil, a natural dietary source of adenosine. Reo gets 2 per day, so I would increase that based on my dog's weight.
5) Evaluate the results of the blood tests. If the SuperChem CBC shows elevated liver enzymes, I would start my dog on the Vetri-DMG liquid supplement.
6) If (and only if) the EI-1 panel shows the "classic" signs of adrenal exhaustion/Plechner Syndrome (high estrogen, high or low cortisol, low thyroid, low immunoglobulins), I would ask my vet to prescribe Soloxine/L-thyroxine - thyroid hormone.
Then I would contact Caroline Levin to let her know how darned unlucky I am to have TWO dogs with adrenal exhaustion, and that I'm re-starting treatment for a different dog! ;) I would ask again for her support and consultations.
Then, I would consult with Dr. Plechner to initiate DepoMedrol injections. He would suggest dosages based on my dog's blood test results and weight. I would ask again for his support and consultations.
I would not bother with sulfasalazine and oral Medrol to start. I would go straight to the injections. I know hormone injections are very controversial in the veterinary world, but I feel that this was the *single* action that resulted in the greatest, most rapid improvement in Reo. In hindsight, I think we could have helped her recover much quicker, if we didn't spend over a month trying a variety of things.
After the injection series is completed, I will begin oral Medrol dosing.
7) Initiate veterinary acupuncture. My experience with Reo showed that acupuncture truly helped to mitigate her symptoms and made her feel a lot better post-treatment. I believe this really helped! I would also ask the vet acupuncturist to provide me with two supplements: Standard Process Enteric Support (to help with the low immunoglobulins and gastrointestinal upset) and Standard Process Adrenal Support (to help support normal adrenal function).
8) Better take care of myself. I was a wreck early on! I would be better about taking the time to get massage and/or acupuncture for myself to help me reduce the stress I am feeling.
9) Take the dog for walks, even if they're short, and even if they're difficult. Take joy in every small bit of forward progress.
10) Monitor the dog's progress by repeating the CBC and EI-1 panel every 3 months for the first year. Be prepared to support my dog with an additional injection, or Medrol "pulsing" during the spring and fall should symptoms return, when natural adrenal activity is highest.
You will notice that I didn't get an ERG for my newly-diagnosed SARDS dog, which may seem strange to some. But for me, I don't need to have an ophthalmologist take $400 to tell me my dog is blind, has SARDS, and will never see again, thankyouverymuch. I'm glad we had an ERG for Reo, but if I was unlucky enough to have another SARDS dog with an EI-1 panel showing adrenal exhaustion/Plechner syndrome, I would not get an ERG for that dog. If you've been reading my blog, you may recall that my opinion is that SARDS is a symptom of adrenal exhaustion/Plechner Syndrome. So, I prefer to treat the underlying cause.
I truly hope I never have to deal with another dog with adrenal exhaustion/Plechner syndrome/SARDS. But if I am unlucky enough, or if one of my friends has this situation, at least I am better prepared as a dog owner, and know what I will do to advocate for the correct treatment.
Showing posts with label ERG. Show all posts
Showing posts with label ERG. Show all posts
Wednesday, November 16, 2011
Thursday, October 6, 2011
Ophthalmologist appointment, take 2!
In some ways our appointment yesterday was pretty disappointing from my point of view, at least at first. We were a little early, so we enjoyed the nice weather outside and walked all around the building. Reo was hopping up and down from the curb, going around trees and bushes, and marking where all the other dogs before her had done their business before her!
When it was finally time for our appointment, and we went into the exam room, Reo was really distracted and wanted to sniff everything - she seemed fairly excited (I'm sure she was picking up some on my excitement, too). Dr. C came in and tried to get her to come to him - again, she was really distracted with all
of the smells and couldn't have cared less about Dr. C or his assistant! She gave them both courtesy nubbin' wags, but that was about it!
I gave him a quick update on all of the things that we had done with Reo post SARDS diagnosis (trying to fit 7 months in 5 minutes isn't so easy!). Dr. C was throwing some cotton around, but again, Reo was not focused in the least, and had her nose to the ground most of the time. I tried to get her to sit and focus, and I would do the cotton test, but wasn't having much success, either. I kind of wished we could have talked for a few minutes and let Reo get all the sniffs out before proceeding with the testing. :-/
I asked if we could do some functional testing. Dr. C said that they had an obstacle course for large dogs, but that it wasn't appropriate for small dogs (whatever that means!). So, we set one up in the exam room with a chair, the doctor stool, trash can, and my purse. She went through it just fine, and didn't bump one thing!
Then he turned the light off and did her eye examination, while I blabbed on about the treatment we pursued, and the "evidence" we had for her regaining some sight. His examination showed a "blind" dog - Reo had no menace reflex, and no dazzle reflex. Her PLRs were sluggish, and slightly incomplete. None of this was a
surprise to me - I already knew all of that.
He said that her retinas were "thin", but did not seem detached/very reflective based on the exam. I asked him whether or not he would expect a SARDS dog to have detached/degraded retinas after 7 months of being blind. I wanted to uncover whether Reo's retinas still being intact was an indication that she still had some retinal activity. Unfortunately, it seems that this answer isn't so straightforward - another case of "every dog is different". He told me the story of a patient who went blind due to something other than SARDS, and this dog's retinas are normal over a year after blindness. So, maybe not all dogs' retinas go through the apoptosis to destroy them? This was surprising/confusing to me - I thought if the retina is not used by the body, the body destroys it. Will have to look into this a little more...
We talked a lot about adrenal exhaustion vs. IMR and IVIg. He is really familiar with Dr. Grozdanic's work. His impression is that Dr. G is taking a lot of flack from the vet community because there are so many different variables with his protocol, and not enough control groups to be a "real" study or show "real" results. This was surprising to me, and disappointing also, as my impression of Dr. G's work was that it was considered a breakthrough in the vet community. Just goes to show that if a theory is outside the traditional lines of thinking, it can/will be met with resistance from at least some.
I gave him some of Caroline's research papers to review or have on file, including some of restored vision, and also a dog that got IVIg treatment but still developed adrenal exhaustion. We agreed it was really unfortunate that her papers are "dismissed" by the vet community because they are not peer-reviewed (and because Caroline doesn't have DVM after her name), as if it discredits a particular study of a dog.
We reviewed Reo's bloodwork - there was no denying that she has made progress! Dr. C was interested in this, but it was "outside" his area of specialty, so didn't make too many comments.
Ultimately, Dr. C said that all that mattered was that we thought that Reo had made improvement, and if we think that she can see based on her "real life" tests, than that was a great thing. His examination revealed that if Reo was not blind, her vision would be very, very limited.
At first I thought he was being dismissive and flip, and it sort of offended me!! I wanted to do more functional tests, obstacle courses, take her outside and show him how good she does on her own. I wanted to turn him into a believer, if you will, and prove to him that she has some functional vision!
After some discussion, I decided not to repeat the ERG, or get an ultrasound. I didn't want to put Reo through the stress of both tests, and I didn't want to pay several hundred dollars for Dr. C to tell me she's "still" blind. :-/
I feel like he just wasn't interested enough in the curiosity of Reo's case to really put forth an effort into pursuing a lot of functional testing. Though unfortunate, and upsetting to me at first, I accept it. I had a good cry after leaving the office - mostly my own frustration - and felt better afterwards. I think I was frustrated from my own high expectations, and those expectations not being met. I also feel frustrated that research from Dr. Grozdanic, Caroline Levin, and Dr. Plechner are being dismissed, when it is so clear to me (and others whose dogs have undergone treatment) that progress can be made!!
It's true that we know Reo better than anyone, and we know that she has some functional vision left. She went hiking in the woods and did fantastically, for crying out loud!! In the end, that is enough for me. We will continue to share our story and blog, and do what we can to raise awareness for SARDS, and
the success with the treatment we pursued. Ultimately, I'm happy that she is on her way back to health - regardless of how much she can see, or for how long her vision returns.
I am keeping the faith! :)
When it was finally time for our appointment, and we went into the exam room, Reo was really distracted and wanted to sniff everything - she seemed fairly excited (I'm sure she was picking up some on my excitement, too). Dr. C came in and tried to get her to come to him - again, she was really distracted with all
of the smells and couldn't have cared less about Dr. C or his assistant! She gave them both courtesy nubbin' wags, but that was about it!
I gave him a quick update on all of the things that we had done with Reo post SARDS diagnosis (trying to fit 7 months in 5 minutes isn't so easy!). Dr. C was throwing some cotton around, but again, Reo was not focused in the least, and had her nose to the ground most of the time. I tried to get her to sit and focus, and I would do the cotton test, but wasn't having much success, either. I kind of wished we could have talked for a few minutes and let Reo get all the sniffs out before proceeding with the testing. :-/
I asked if we could do some functional testing. Dr. C said that they had an obstacle course for large dogs, but that it wasn't appropriate for small dogs (whatever that means!). So, we set one up in the exam room with a chair, the doctor stool, trash can, and my purse. She went through it just fine, and didn't bump one thing!
Then he turned the light off and did her eye examination, while I blabbed on about the treatment we pursued, and the "evidence" we had for her regaining some sight. His examination showed a "blind" dog - Reo had no menace reflex, and no dazzle reflex. Her PLRs were sluggish, and slightly incomplete. None of this was a
surprise to me - I already knew all of that.
He said that her retinas were "thin", but did not seem detached/very reflective based on the exam. I asked him whether or not he would expect a SARDS dog to have detached/degraded retinas after 7 months of being blind. I wanted to uncover whether Reo's retinas still being intact was an indication that she still had some retinal activity. Unfortunately, it seems that this answer isn't so straightforward - another case of "every dog is different". He told me the story of a patient who went blind due to something other than SARDS, and this dog's retinas are normal over a year after blindness. So, maybe not all dogs' retinas go through the apoptosis to destroy them? This was surprising/confusing to me - I thought if the retina is not used by the body, the body destroys it. Will have to look into this a little more...
We talked a lot about adrenal exhaustion vs. IMR and IVIg. He is really familiar with Dr. Grozdanic's work. His impression is that Dr. G is taking a lot of flack from the vet community because there are so many different variables with his protocol, and not enough control groups to be a "real" study or show "real" results. This was surprising to me, and disappointing also, as my impression of Dr. G's work was that it was considered a breakthrough in the vet community. Just goes to show that if a theory is outside the traditional lines of thinking, it can/will be met with resistance from at least some.
I gave him some of Caroline's research papers to review or have on file, including some of restored vision, and also a dog that got IVIg treatment but still developed adrenal exhaustion. We agreed it was really unfortunate that her papers are "dismissed" by the vet community because they are not peer-reviewed (and because Caroline doesn't have DVM after her name), as if it discredits a particular study of a dog.
We reviewed Reo's bloodwork - there was no denying that she has made progress! Dr. C was interested in this, but it was "outside" his area of specialty, so didn't make too many comments.
Ultimately, Dr. C said that all that mattered was that we thought that Reo had made improvement, and if we think that she can see based on her "real life" tests, than that was a great thing. His examination revealed that if Reo was not blind, her vision would be very, very limited.
At first I thought he was being dismissive and flip, and it sort of offended me!! I wanted to do more functional tests, obstacle courses, take her outside and show him how good she does on her own. I wanted to turn him into a believer, if you will, and prove to him that she has some functional vision!
After some discussion, I decided not to repeat the ERG, or get an ultrasound. I didn't want to put Reo through the stress of both tests, and I didn't want to pay several hundred dollars for Dr. C to tell me she's "still" blind. :-/
I feel like he just wasn't interested enough in the curiosity of Reo's case to really put forth an effort into pursuing a lot of functional testing. Though unfortunate, and upsetting to me at first, I accept it. I had a good cry after leaving the office - mostly my own frustration - and felt better afterwards. I think I was frustrated from my own high expectations, and those expectations not being met. I also feel frustrated that research from Dr. Grozdanic, Caroline Levin, and Dr. Plechner are being dismissed, when it is so clear to me (and others whose dogs have undergone treatment) that progress can be made!!
It's true that we know Reo better than anyone, and we know that she has some functional vision left. She went hiking in the woods and did fantastically, for crying out loud!! In the end, that is enough for me. We will continue to share our story and blog, and do what we can to raise awareness for SARDS, and
the success with the treatment we pursued. Ultimately, I'm happy that she is on her way back to health - regardless of how much she can see, or for how long her vision returns.
I am keeping the faith! :)
Wednesday, October 5, 2011
Reo's D-day!
10/05/11 - Everyone please think good thoughts for Reo and me today (in about 3 hours)!
Today is her 7 month treatment anniversary of beginning the Levin and Plechner protocols (6.5 months post SARDS diagnosis), and we're going back to the ophthalmologist diagnosed her as blind and who said she had "no hope" to regain vision.
He has seen the videos I've taken of her navigating the obstacle course, and he is intrigued. I want to prove to him that she can see (what we already know, as well as 3 vets have confirmed)! It is so clear to me that she can see based on her being able to navigate new places (obstacles, stairs, etc.) she's never been. He'll do another ERG and an ocular ultrasound as well as functional testing - fingers crossed! I am so excited and nervous!
As much as I would love for there to be a detectable change on the ERG, I understand that a plain ERG machine is not very sensitive, so I'm not expecting a miracle. I am slightly worried about her seeming vision regression since I've been back from my trip, but I'd like to move forward with the appointment (it took us a while to schedule, and a month of waiting!) Still, I have some hope!
Will let everyone know the results! Fingers crossed.
Today is her 7 month treatment anniversary of beginning the Levin and Plechner protocols (6.5 months post SARDS diagnosis), and we're going back to the ophthalmologist diagnosed her as blind and who said she had "no hope" to regain vision.
He has seen the videos I've taken of her navigating the obstacle course, and he is intrigued. I want to prove to him that she can see (what we already know, as well as 3 vets have confirmed)! It is so clear to me that she can see based on her being able to navigate new places (obstacles, stairs, etc.) she's never been. He'll do another ERG and an ocular ultrasound as well as functional testing - fingers crossed! I am so excited and nervous!
As much as I would love for there to be a detectable change on the ERG, I understand that a plain ERG machine is not very sensitive, so I'm not expecting a miracle. I am slightly worried about her seeming vision regression since I've been back from my trip, but I'd like to move forward with the appointment (it took us a while to schedule, and a month of waiting!) Still, I have some hope!
Will let everyone know the results! Fingers crossed.
Thursday, September 15, 2011
Reconnecting with our ophthalmologist
08/10/11 - Today, I emailed Dr C., our ophtho who diagnosed Reo's SARDS. Originally, he had asked me to keep in touch as we pursued treatment for Reo, but I hadn't heard back from him after a couple of updates, so I wasn't sure he was interested. However, after having 3 separate vets confirm that Reo has some functional vision, I thought it would be worth reaching out again.
I sent the cotton ball videos, and said I thought if we can confirm some vision and activity on Reo's ERG, it sounds like he might have a nice publishing opportunity on his hands! Certainly my curiosity about the ERG was piqued.
This is part of Dr. C's response to me:
In the discussions I had with a few other ophthos out there, no one had seen any measurable improvements beyond normal adaptive changes. As a matter of fact, many ophthalmologists are not recommending the "Living with Blind Dogs" book any longer due to that controversial chapter.
That being said, I am very happy that Reo is getting back into her routine and doing well. I am more than happy to see her again. I think PLRs, menace response, and dazzle reflex would be good first tests as well as cotton ball tracking, etc. I would def. like to do an ERG and I will discount that heavily since I am using it for "research". And, you are absolutely correct, if we are able to detect a change in ERG waveform amplitude then that could be data that could be used for a research paper in the future.
I was a little disappointed to hear that some ophthos are no longer recommending Caroline's book due to "controversy", but it is so hard to know exactly what parts of the protocol people undertake before deeming it a "failure". Was every part of the protocol implemented? How soon after SARDS diagnosis? There are a lot of variables. Nonetheless, the book is a terrific resource for anyone who has a blind dog (regardless of cause) - there is so much information on training, etc. that it is sad to hear that some are no longer recommending it. SARDS dog owners need more resources, not less!
I printed out a few things to take with me when we see Dr. C again (we have an appointment in October, at about the 7-month mark of Reo's treatment). I would like to discuss MANY things with him during this time (I hope he is prepared! ;) )
One thing I have heard from SARDS dog owners, Caroline, and my
research, is that PLRs in SARDS dogs are often "normal", meaning, the
pupil does respond to "normal" light.
Indeed, Reo's are excellent in natural lighting (sometimes they behave
strangely in fluorescent lighting - I'm not sure why).
Monday, August 22, 2011
Reo's SARDS diagnosis
03/05/11 - We went and saw Dr. N for Reo's sudden loss of vision. Her exam revealed glaucoma negative (good), cataract negative (good), retina intact/healthy (good), and blood pressure normal (good). They took some of Reo's blood for a CBC (Complete Blood Count) and diabetes test. We had to wait over the weekend for the results!
03/07/11 - We got Reo's bloodwork back - most things were normal, except for a slightly elevated liver enzyme (GGT), and slightly elevated triglycerides. Because there wasn't anything obvious going on to explain Reo's vision loss, we were referred to an ophthalmologist.
03/11/11 - By the time Reo's appointment rolled around, we think she had absolutely no vision. Dr. C agreed that Reo's retinas looked intact/healthy, but she had no menace response, no dazzle reflex, and she would not follow a cotton ball dropped to the floor. When placed in the middle of the floor, Reo would not take a step, seemingly fearful of unfamiliar surroundings.
We decided to get an electroretinogram (ERG) taken. If we saw electrical activity, we might suspect something different going on, like a tumor, so we wanted to rule that out. Reo's ERG was flatline. Dr. C diagnosed SARDS, and told us Reo would never regain her vision. He briefly mentioned some revolutionary work at Iowa State by Dr. Grozdanic, using IVIg treatment, but that Reo wasn't a good candidate for this. Dr. C also gave us the name of Caroline Levin's book, "Living With Blind Dogs" to use as a resource, and mentioned that some SARDS dogs develop Cushing's disease, so we'd have to watch out for that. But, for the most part, Reo should live a happy, healthy life once adjusted to her blindness.
We were completely devastated! I couldn't stop thinking about all of the things Reo loved doing that now seemed impossible. Knowing absolutely nothing about SARDS, and having far too many questions, I spent the entire weekend researching this disease, reading everything I could online, and slowly putting puzzle pieces together. I felt at a slight advantage, having a scientific background, as it helped me understand a lot of the endocrinology I was reading. I know that most dog owners are not so lucky. Fortunately, many resources are written in plain English, to help anyone understand. My next post will share the resources which I found most helpful.
03/07/11 - We got Reo's bloodwork back - most things were normal, except for a slightly elevated liver enzyme (GGT), and slightly elevated triglycerides. Because there wasn't anything obvious going on to explain Reo's vision loss, we were referred to an ophthalmologist.
03/11/11 - By the time Reo's appointment rolled around, we think she had absolutely no vision. Dr. C agreed that Reo's retinas looked intact/healthy, but she had no menace response, no dazzle reflex, and she would not follow a cotton ball dropped to the floor. When placed in the middle of the floor, Reo would not take a step, seemingly fearful of unfamiliar surroundings.
We decided to get an electroretinogram (ERG) taken. If we saw electrical activity, we might suspect something different going on, like a tumor, so we wanted to rule that out. Reo's ERG was flatline. Dr. C diagnosed SARDS, and told us Reo would never regain her vision. He briefly mentioned some revolutionary work at Iowa State by Dr. Grozdanic, using IVIg treatment, but that Reo wasn't a good candidate for this. Dr. C also gave us the name of Caroline Levin's book, "Living With Blind Dogs" to use as a resource, and mentioned that some SARDS dogs develop Cushing's disease, so we'd have to watch out for that. But, for the most part, Reo should live a happy, healthy life once adjusted to her blindness.
We were completely devastated! I couldn't stop thinking about all of the things Reo loved doing that now seemed impossible. Knowing absolutely nothing about SARDS, and having far too many questions, I spent the entire weekend researching this disease, reading everything I could online, and slowly putting puzzle pieces together. I felt at a slight advantage, having a scientific background, as it helped me understand a lot of the endocrinology I was reading. I know that most dog owners are not so lucky. Fortunately, many resources are written in plain English, to help anyone understand. My next post will share the resources which I found most helpful.
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